An apt title by Mike and the mechanics for this chapter.
We’ve had yet another successful trip to Spain, plus a week in our favourite part of North Wales. Alls well with both John and I. I have one more ent appointment in June 23 then I am finished. My new consultant did reiterate I will always have access to them and they are only a phone call away if I have any issues,there’s no need to involve gp. Which is reassuring to know.
Our friends Tanya and Blane are British but live in Spain she has cancer unknown primary and is soon starting her 3 rd course of chemo in 2 years.We met through the Macmillan forum and my blog So cancer can bring total strangers together.
We had a good summer sailed out to Spain in September,had a few weeks in Los Alcazares then met up with Tanya then went on to a new area for us Huelva province in the Bay of Cadiz. We then returned back to Los Alcazares via Andalusia a brill side trip.
This year I really felt well. From getting off the ferry everything felt right. I drove a fair distance on the first day. No issues eating which is always a bonus . We had some decisions to make on this trip do we give up the lease in the apartment or do we extend it. We didn’t rush into this decision. We reassessed our priorities,tweaked our day to day activities. Did more walking,again this was something I used to do a lot before diagnosis we also reigned in our biking taking shorter rides. Still managed over 800 km. The conclusion was we’ve extended the lease.
Where has that last 5 years gone! I see Dr Sen at Leeds mid January for our annual catch up then one more next year. So life after cancer continues. What’s changed for me I still can’t tolerate anything remotely spicy or alcohol, many cheeses are difficult especially aged ones. A small price to pay.
To anyone starting out on the cancer pathway remember head and neck cancers respond extremely well to treatment. In the last 5 years proton beam radiotherapy is being trialed,too early for definitive results. Immunotherapy is having excellent results plus on the Macmillan forum I am in touch with a lady who is patient number one in the Modi vaccine trial in conjunction with scan cell.
Here’s me at our first craft fair in December. Nicola our daughter has started a small business so all you budding gardeners or want to be gardeners take a look at our website. You might even get a packet of seeds packed by me ! In-between our trips to Spain John and I are her labourers. http://www.collieflowers.co.uk
Anyone in treatment a reminder for Dr Peter Harvey s article of what happens next.
Haven’t updated in a while a few things to report more of that later. This evening at our daughters who is away celebrating her 40th birthday belatedly, our grandson (11) was playing with one of his school friends who he had invited back for tea, which was fine. As we sat down he explained to Bridie with the following: Sometimes when Nana eats she starts choking don’t worry she has a throat condition because she had tonsil cancer. Then they both carried on, just just shows life goes on. By the way it’s very rare I do choke, but he wanted to make sure his friend was aware.
Talking of awareness 28th July is once again world Head and neck cancer day an ideal time to make people aware of our cancer. Statistics show one in two if us will get cancer, people are aware of what to look out for with breast, lung, prostrate and bowel(thank you to Dame Deborah James aka bowel babe who recently died) for not being afraid to shout from the roof tops check your poo. I’m an advocate for mouth awareness, my particular type h p v is becoming more prevalent every week in the Macmillan and Cancer UK forum. Plus the age factor seems to be edging down towards both males and females in the 40-60 year age groups rather than those of more senior years. So I am not afraid to tell strangers my story if the occasion arises. Our grandson starts high school in September and will be in the age group where HPV vaccine is offered he’s already telling his friends about me and to have the vaccine to help eradicate HPV cancers in the future. In the meantime take a few minutes every month to check your mouth and neck for anything unusual tell all your friends.
In fact we all spend time checking Facebook, Twitter and Instagram why not fit 20 minutes once a month on our own bodies. I have a monthly reminder on my phone. I’m not obsessed but we have a magnifying mirror attached to the bathroom mirror and a small torch so I can check my mouth. I know my mouth and my hubby checks my neck by standing behind me he’s done this since treatment finished.
Which brings me nicely onto the next part. I am now on 6 monthly checks. On 17th May I had scope and a thorough check with a new consultant(Miss Farrar is sadly off on long term sick, get well soon). To be fair she had left comprehensive notes regarding my vocal chord cyst, we compared last video and no change so all ok next appointment late November. The following week was a bit of a shock routine Dental appointments with Jess my hygienist,she suddenly stopped cleaning around the back of my wisdom tooth and said I’m going to stop Hazel there is something that I don’t like so she took a photo with her iPhone and disappeared off to find Amita the dentist. A few minutes later Amita came rushing into the room with a concerned look on her face I thought oh no whats wrong now. The first words to me were I hope that you’re not going away soon and if you are cancel to which I replied yes I am I going to Scotland on Saturday and no I’m not cancelling. We’re both looked at the photo and yes there was a small lesion on the bottom of my gum, I wasn’t overly concerned it wasn’t there at the weekend, it wasn’t there when my ENT consultant examined me. To be fair to Amita as she said she’s my dentist I am her patient she wanted to put me on the 14 the cancer pathway which I was fine about but I still said I’m going to Scotland as I know I won’t hear anything for 14 days so off we went to Scotland we had a fab time I honestly had no concerns two days later the lesion had disappeared but was fully supportive of her decision. I had a text message a few days later that I was to have a phone call on the 6th June really nice consultant at max fax we chatted 15 minutes and I went for a face to face the 9 th our wedding anniversary. Bizarrely the 6th of June was four years exactly to my cancer diagnosis. On arrival I was taken for an OPG radiograph which is an orthopantomograph of the mandible. Shortly after we were with the consultant who had the image and all is fine. As he said he had seen the original photo he wasn’t overly concerned but the images confirmed that the lesion had gone. He did go on to say that the dentist had done the right thing as it would’ve done the same with me presenting as I did and given my previous history. One good thing came out of the appointment it confirmed that all is okay around my mandible I have a slight bone loss around my LR 8 which have nothing to be concerned about at the moment. The consultant like me says food trauma had caused the lesion. I had eaten a ryvita the evening before so just goes to show almost 4 years down the line our mouths can still be sensitive. I have a follow up early August which will sign me off this pathway.
The offending blob2 days later not a brill photo taken by hubby
What’s new with me.
Since my last post we’ve done our spring trip to Spain, sadly the weather wasn’t kind, we had 50 days rain not all day but enough to impede cycling. Both John and I caught covid a week into the trip, we didn’t get it too bad. Although we both took 10 days to test negative. I ate pretty much what I fancied which is progress over previous trips. This time we flew so did miss the car especially with weather being so mixed. We ended up cycling 800km which was good all thjngs condide
Favourite tapas stuffed aubergines Fit 65 with new shorter hair as wellSaw too many skies like this on this trio.The rain in Spain Just to give hope to those just starting out on the cancer trail .Life does continue .Blue skies
We then spent May half term on the Black Isle north of Inverness with James our grandson and lots of wildlife. Dolphins, red kites, red squirrels and red deer. We had a fabulous time rounded off by meeting Mike from Australia in Dundee. Mike is just over 2 years post treatment and was over with his wife Katey daughter Millie and Charlie their new baby. We had FaceTimed a few times but was great to have lunch and a real chat. The trip finished off with another cancer catch up with Paul who has been in our what’s app grouo over 2 years was great to meet him and his wife Moira.
Off to see New Top gun movie in Inverness loved itNo sign of Nessie on the LochYes I can eat salad nowRed kite photo Johns camera Dolphins at Chanory point again photo off a Johns camera Meeting MikeLunch in DundeeCoffee in Falkland with Paul and MoiraNew hair cut even shorter. Plus a reminder factor 50 every day still get a bit of colour .
I am using bee propolis to see how it effects my burning tongue issues with certain foods, I have been using it for 3 weeks now and I am pleased with it so far. I will report back later.
Bee propolis
Lengthy update but it’s been over 6 months, life goes on. I am fast approaching 4 years since treatment finished. Happily living my life and If I can help the offers always there. In the meantime it’s back to the allotment and greenhouse
One life live it preferably with aubergines growing well.Onwards and upwards.
One of my biggest fears I had when diagnosed was after it all finished was I still going to be me. I addressed this on an earlier post, but thought it’s worth saying again. In many many ways everything has changed, but I am still me, warts and all. Whats changed, well, for me I do think I am a more compassionate person. I still actively participate on both Macmillian head and neck cancer forum and on Cancer Uk chat. Having been there, seen the film and got the t shirt, I can emotionally detach myself when helping others through the minefield of head and neck cancer. Our what’s app groups still in action plus Dani and I are personally monitoring 2 through recovery stage. One of the questions I get asked a lot is will cancer change me, Yes to a certain extent it will change you but in my case it hasn’t and I won’t ever let it define me. An article that’s worth reading above.
What’s new with me, we managed to sail to Spain in the 15th of September for 9 glorious weeks of biking, walking and visiting an area of Spain we had never visited Extremadura. But the week before we sailed I waltzed into my ENT consultation, as usual bright and breezy Miss Farrar was on duty she did the scope, but this time a pause while photos were taken. After which she showed me a benign cyst in my vocal cord. Nothing to worry about she said, given your treatment and saliva issues we will monitor it and whip it out when needed. Ok I’m going away next week, no problem see you in your return. Me being me said fine as long as you are sure. So I took a photo ( see below). Got back to car and told John, by then I was a tad upset as he wasn’t in with me he didn’t believe me at first. We had a fab time cycled 1100 km so am back to pre cancer fitness, plus I no longer have a 20 minute power nap. We returned to UK 18th November and I saw Miss Farrar 23rd November, our local hospital now has a new scoping machine HD so off I went to check everything out. The cyst is still there it’s not grown, cancer wise everything’s looking great. We had a long chat I am now on 6 monthly reviews, with the current covid crisis in the NHS she decided to look again in May. Im fine with that I don’t know it’s there it doesn’t cause me any issues. Why take the risk if an operation in winter, little did we know Omnicron would rear it’s ugly head 2 days later
As you can see no change in 11 weeks apart from 2 nd picture is on new scope machine. The cyst is the white blob top right hand corner.Overall the picture is my vocal cord folds,when you say eeeeeeeee this opens up the vocal cords.You can also see how moist the general area is and healthy looking tissue.
As I mentioned earlier we had a side trip to meet up with a fellow cancer patient whom I had been in contact with almost a year. Tanya and her husband moved to Spain 7 years ago. She was diagnosed via a lump in her neck (neck dissection) but the pesky primary was never found. Her treatment therefore was different to mine with her being CUP cancer unknown primary her entire body was treated with a chemotherapy cocktail. Shes now monitored every 3 months and pet ct scanned every 6 months. We got on really well and are hoping to meet up again soon. So cancer has brought new people into our lives which is a good thing.
Tanya and I we hit it off straight away. Might have been something to do with the cheddar cheese, cream, tea bags and knitting wool I brought over. Only joking. Tanya has asked me to point out she’s 20 lb over her usual weight the chemo cocktail side effect is weight gain, but like she says better than the alternative!Extremadura definitely left a bit of our hearts there.
What’s new with me. I now wake up most morning with a nice moist mouth. Honestly I never in those early dark months of recovery thought I would say that again. I still use 1/2 a xyimelt at night rarely need to sip water. Eating, I am eating as well as I did prior to treatment maybe not as much, but that’s fine. What can’t I eat, anything remotely spicy which is fine, I can adapt recipes use coconut milk, cumin and coriander. I now can eat rice so that’s a bonus. Drink is different I wasn’t a big drinker so could take it or leave it, prior to cancer now it’s leave it. I can drink a nice alcohol free beer, have tried odd sip of Johns wine etc but mouth can’t take it, Remember we are all different I know many who can still enjoy a tipple, But I can and still do eat chocolate in any shape or form.
All that’s left for 2021 is to thank everyone for reading my blog and I hope it helps someone. Please feel free to message me I will always get back to you. John and I wish you all a Merry Christmas and a peaceful New Year. Stay safe everyone in 2022.
31st August 2021 marks my 3 year anniversary of my last radiotherapy session for tonsil cancer.
You may think this is a strange title, but one of the good things that’s come out of the last 3 years is we have increased our circle of friends through my cancer diagnosis. We’ve met up with quite a few of theses whilst on our travels in the U.K. this year which has been a bonus. I am still running along with Dani a few what’s app groups which we started. When covid first started it became apparent some people would appreciate our help.
A snap shot of John and I meeting up with friends old and new.
Just to give hope to anyone starting out or in treatment, if you would have said to me in the dark days of diagnosis and waiting for tests, that 3 years on I would have done the following, I wouldn’t have believed you; Travelled to the apartment for a total of 49 weeks (including almost 10 months of not being allowed out if the country). 7 U.K. trips mostly to Wales but also discovering the delights of Hadrian’s wall country in Northumberland.
Our step granddaughter Meg had another little girl Cordelia to add to Delilah and Penelope, plus get to see her married to Kaine. Our step grandsons Dan and Liam settle down in their own houses with their girlfriends Loreta and Lucy respectively. Also this September James our grandson starts his final year at junior school .Thankfully all the way through our daughter Nicola and her husband Mel have never treated me any differently, for which I’m grateful I am not a touchy feeling person, they were there when I needed them. None of these would have been possible without the excellent care I received from the NHS and not forgetting John my long suffering husband, who readily admits he no longer hears me say ‘my mouth is dry’ as he’s heard it all before .
What’s new with me; the fibrosis I started with in December last year, is now manageable on the rare occasions it appears. It still seems to be that preparing vegetables is the main culprit, so I tend to pass that on to John. Its the cutting action onions, potatoes seem to be the worst. Dry mouth it’s still there but no longer the Sahara desert type of mouth. Overall I would say 80% of the time I have a decent amount of saliva. Nighttime I still use 1/2 a xyimelt, plus odd sips of water. Food wise I doubt now at 3 years a spicy hot chilli or curry will ever pass my lips again. I have tried the odd sip of alcohol but for me it’s a no no, I get dry mouth straight away, so it’s water or an occasional Diet Coke.
One thing that I am still getting is burning tongue, this seems to be worse when I’ve had cheese (cooked cheese is ok) or yoghurt both of which are fermented. So I now limit my intake of both which is a shame as I adore cheese but needs must.
Talking with friends in what’s app group, at least 6 of them are experiencing cognitive impairments, for some concentration has gone, others find words don’t come out as quickly as they used to, and others experience short term memory loss. All the above are a late onset radiotherapy side effect. Luckily for me I am not experiencing any of them, I regularly do puzzles, sudoku, solitaire, reading and crocheting all of which I need to concentrate on, so maybe that helps, who knows. Everyone is different as we always say, the others are keeping a close eye on themselves and will repost back to the consultants.
That’s about all for now, so onwards and upwards to infinity and beyond. I will update blog as and when.
A few photos of this years uk trips and my greenhouse
Today I’ve copied a list from my friend Dani regards the future of head and neck referrals plus give it a look as things are possibly going to change in my opinion for the better
Head and neck collie ups are still following protocols back from the 1960:70 s era. Nowadays things are more patient driven , the way forward is possibly going to be a pet xf scan after one year then self monitoring with guidelines . Studies in feasible ways forward are ongoing.
Well what a year that turned out to be! Last January as we were putting Christmas away we put a small box of Christmas things separately as we were going to fly over to Spain for Christmas. None of us had heard of Wuhan let alone Coronavirus, Covid-19 now it runs our life. So for our Spanish friends Feliz Navidad. As I type today London and the south East has gone into tier 4 no families can mix at all. Here in West Yorkshire we are tier 3 so will get Christmas Day with our daughter, son in law and grandson plus new puppy Cooper.
Smaller gathering than usual,nevertheless a good day was had by all.
What’s new with me ? I am now 28 month post radiotherapy. We returned from Spain on the 23rd of November straight into 14 days quarantine, which was fine, the rules are there to be obeyed. At the moment NHS dentistry not allowed for routine work, so had to bite the bullet and have taken a private dental plan out. It is more for my teeth as lack of saliva can and does create problems. I am usually seen every 3 month, but my last check up was February like millions of others. I needed one small filling so it could have been worse, so remember anyone going through treatment take care of your teeth. I also for the first time had a fluoride varnish, I am unsure about that but will see how I go, it wasn’t painful, but I found it hard not to have a drink for 45 minutes after it’s application.
Doing what we do best, riding our bikes, calling into local bars for a morning tostadas and coffee, generally living our life’s.
I am almost up to my pre treatment fitness, we cycled 1000km and we walked 400km a far cry from our first trip after treatment when I did 12km and walked to the car. If we hadn’t had a local municipality lockdown for our last 3 weeks we would have easily added to those totals. Theres always next year! Although we do think our next trip will need to be after we’ve had our vaccine, we are both in the 60-64 bracket so are keeping everything crossed for the Astra Zenica vaccine to be approved and mass vaccinations can start. Although I’ve had cancer and still in remission it doesn’t make any difference to our position in the queue but so be it. After this year there’s so many people who are no longer around to share holidays, we are lucky.
I have had my first face to face appointment,moats since February. It was with Miss Farrer who is a new ENT consultant, so it was the camera up the nose and down the throat, all looked good. Upon feeling my neck she commented that I have a small amount of late onset radiation fibrosis starting in my radiation side tendons, nothing serious, she will send me for physio don’t know when with covid-19. Next appointment will be a phone call, then the one after with the nursing team. I will be almost 3 years post treatment by then, so instead of taking ENT cancer consultants I will be seen at the cancer clinic so the consultants will be in the vicinity if I have any issues. Of course the conversation ended with any problems please get straight in touch the NHS is ready and waiting don’t delay in contacting. So anyone reading this please please don’t delay my type of Cancer is curable if caught in time.
John and I hope everyone has had a good a Christmas as they can given the current state of the world at this present time. At the moment we have everything crossed for the Astra Zeneca vaccine to be approved in the next few days and 2021 can be more of a normal year for everyone.
Hi the above song by Alan Jackson has become a favourite of mine and hubbies recently if you have Amazon music it’s worth a listen, we aren’t country fans but the words resonate with our current climate. I am using the song title for a different reason.
I like many others in remission have been on telephone calls with my consultant. My last face to face appointment was early February followed by 2 telephone calls in May and July. I rang last week to check when my next call would be as I was over due. Imagine my dismay when the lady on appointments informed me I was now on a general ENT pathway and routine appointments due to covid-19 were no longer being given. No amount of saying I was a cancer patient 2 years into a 5year check up programme would or could budge her. She said glibly sit down with a cup of tea and I will escalate this call to ENT and someone will call you back. Well I would be sitting here with a very cold 4 day old cup of tea if I hadn’t taken things into my own hands.
Below you will see the email I sent to my Macmillan nurse who very promptly rang us the next morning after she had instigated a zoom call with various people. Firstly she apologised for the way I had been handled and then thanked me profusely for writing about something they were aware of, but until patients complain in writing nothing can be escalated further.
I received a phone call from P.A.L.S (Patient Advisory Liaison Service) the same afternoon asking did I want to escalate my situation via the board of my trust to find out who and why, I said yes please. So now all cancer patients at my trust will be investigated if they have been downgraded. The reason I am writing this today is please do not take Covid-19 as an excuse for not getting the follow up treatment that we deserve and need. I have heard that many of you are not getting scoped, again I have been told my trust have started scoping as it’s the best way for the consultants to see what’s happening.
On a happier note we are over in Spain living our lives for a few weeks. I have found an insurer Staysure who for a small premium will cover for travel against Foreign office advise and have taken my tonsil cancer into account and I am covered.
So our motto One life live it still stands, I am walking and riding my bike, everyday the sun is shining. We are being sensible, avoiding any crowds, but to be fair our area is very very quiet. Masks are compulsory from the minute we walk out of the apartment and everyone seems to obey. Maybe it’s because the Spanish fines are hefty and the police do patrol.
As for an update on me, I can now eat lettuce, ok it needs mayonnaise but it’s an improvement. I do seem to have had a general improvement since I passed the 2 year post treatment mark,it does seem to have been a magic point for me. Plus to be honest my mouth is saliva wise in the daytime almost normal. If i do go dry I find quick chew of sugar free gum and sip of water remedies it. Nighttime I still use 1/2 an xyimelt and if I wake sip water, but nothing like the early days. So stick with it, it does get better.
Hi the title for this post is This is me, taken from The Greatest Showman (Not that I am a showman); today 31 August I am 2 years post radiotherapy for tonsil cancer with several affected lymph nodes and yes here I am still living my life and riding my bike.
The first photo is me on holiday in Anglesey this week, the bottom one is last day of treatment, did I think I would feel any worse than that photo? If you have read my blog the answer you will know is yes, the first 6 weeks of recovery isn’t a place I would like to revisit.
I am still receiving emails from fellow sufferers which I am always happy to reply to. In these difficult covid-19 times it’s got to be much harder for anyone in treatment, they don’t seem to be getting the same support during treatment and recovery as I was lucky enough to receive, so please if I haven’t covered anything drop me an email and I will try to help.
What’s new with me, the general consensus is once we’ve reached the magic 2 years it’s highly unlikely for any reoccurrence so my fingers and toes are permanently crossed for that. The consultants also say what we’ve got at the 2 year point is usually as good as anything will get. I have been researching that point recently and the thoughts in the USA are now 3 years plus for improvements. Think I will go along with that one. Personally I do feel that I’ve made improvements in these last few weeks, saliva or lack of it at times isn’t always at the forefront of my mind. I know from asking John I no longer say 20 times a day my mouth is dry! Plus on Saturday we drove from Wales to home 3 hours without the need for a loo stop which is definitely progress. I was sipping water but not in copious amounts as previously. So I hope this gives people hope for the future, dry mouth unless you’ve suffered it in my opinion is the worst side effect.
I think the question I get asked the most is when will I eat normally again. This is often asked around week 6 of recovery. Honestly what is normal. Do I enjoy food? Some days yes I do, others it’s just fuel to get through the day. On our recent holiday I had carbonara for first time, I really enjoyed it. So yes I am eating but certain things are still difficult. Some meats noticeably chicken, pork and bacon. Lettuce of any type I think will be a problem for me permanently it just doesn’t want to go down. Sweet things are fine now I have to watch what I eat as weight is coming back on and if I ate the same amount of sweet things I did in first year I could foresee a problem. Fruit is a problem to me, apples, pears and most stone fruits I can choke on unless peeled and then not the easiest to eat. The good old banana and soft fruits are ok, likewise all vegetables are fine. I can eat chip shop chips or deep fried ones, but oven chips or restaurant chips nope so I just don’t order them.
To give hope to anyone struggling I have listed todays food.
Breakfast Weetabix ( or porridge) with blueberries and honey. Lunch home made red pepper and tomato soup with olive bread home made (At last I can eat better bread, ok only with soup but progress). Tea slow cooked lamb shank in red wine, buttery mash, carrots and cabbage. Snacks a banana then a yoghurt. I always have my treat of 2 squares of dark chocolate and some nights a packet if plain crisps. I don’t drink but that’s my choice I wasn’t a drinker before so it’s not something I am missing.
What’s next for me hopefully trip back to Spain to renew the lease on the apartment. Ride our bikes,walk and feel a little sun before winter sets in. I know Spain will be difficult,wearing of face masks is compulsory in all outdoor settings, only in your own environment,on the beach eating or drinking are you allowed to take them off. I don’t have a problem with face masks, I will do whatever is needed it’s just with still having limited saliva I still need to sip water but unless we go I can’t say how I will cope, As I have said previously I am still only phone calls for my appointments,again I understand why but in my next call I am going to ask for a face to face for my next one. I do not want to go a year without someone looking at my tonsil area and throat I don’t feel like anything is amiss but it’s the reassurance more than anything. Don’t get me wrong on each phone call it’s has been said if I feel like there is a problem I will be seen,
Onwards and upwards, and anyone just starting treatment remember it’s hard but it is doable.
Since my last update a lot has happened to our world. I had my last face to face consultation on February 11th, there was talk of a virus in Wuhan province, the Diamond Princess cruise ship was docked in Yokohama but it all seemed unreal on the other side if the world.
For the first time since diagnosis day, my consultation was with Mrs Cruickshank, we hadn’t met since she briskly uttered squamous cancer cells, sorry better get a scope up the nose! She greeted me this time with nice to see you again you’re looking very well did you have an NG tube?So I replied yes I did, to which she replied “jolly good women do better than men in that respect”. So then down to business quick feel of my neck, no camera, just a piece of gauze around the tongue and yank. All looking excellent no reoccurrence everything looking nice and pink all healthy. See you in 10-12 weeks.
So we set off for our usual spring trip to Spain, looking forward to getting lots of cycling and walking in. Maybe the first clue should have been 2 hours from home, a text message from Brittany Ferry’s sailing delayed 24 hours due to bad weather, we carried on as hotel was booked for that night and too late to cancel. That night met up with friends Emma and Paul from Isle of Wight Paul had tonsil cancer 3 years previously, a friendship from the cancer U.K. site. Booked another night in hotel enjoyed a day in Portsmouth had coffee with Lori another head and neck patient who I met via this blog. There is a point to all this which I will address later. Then a phone call at 2000 ferry going now at 0100 so off to the port wasted a night in hotel but in scheme of things it’s only money.The crossing was pretty rough but arrived 27 February and drove straight to apartment.
Things just as we had left them. We managed a few bike rides then on 13th March we knew things were getting serious Spain went into total lockdown and over there lockdown means lockdown. Only one person out at a time and only for specific reasons supermarket chemist or bank. Luckily we have a balcony and a large sun terrace. We didn’t get out again as a couple until the 2nd of May (the day before we drove home) and that was only for an hour’s exercise, with the police patrolling the streets. During this time it had become apparent that cancer patients were beginning to struggle.
Instead of cafe con leche overlooking the beach its coffee on the ledge looking towards the beach from the sun terrace .
Through my blog, the cancer U.K. site and the Macmillan forum I have made many friends who today nearly 2 years on we are still in touch with, plus I made local friends via treatment in the radiotherapy waiting room which became a second home for 7 weeks.
I began to get a feeling when reading posts from new people that covid -19 was impacting on how fellow cancer patients were being treat. Not mentioning specific names but a few of us started our own self support group for a few newbies to help them in their experiences. Of course I am still maintaining activity on Cancer Uk and Macmillan sites. People really have suffered during this time, so my heart goes out to anyone reading this who have or are or just starting treatment I do hope my blog and links to others can help you.
Best advice I can give anyone is don’t be afraid the treatment is hard, the recovery can be long but it is doable. Support is out there, either on the forums,reading our blogs, sending questions only too happy to help where I can. Anyone out there don’t struggle, if pegs are not being offered due to risks associated with covid-19 there is always the NG tube, it’s not that bad, it saved my life. Painkillers; the clue is in the name, do not suffer, pain will always surprise you usually on a Friday night when you think everything’s going fine. So talk it over with your oncologist beforehand, make sure you have them either to hand or a prescription. There’s nothing worse on a Friday night than crying until Monday when you are next at hospital. Food supplements they do vary from disgusting to well disgusting, but once again get ahead, ask your dieticians for samples better to try them before you need them as the tastes do vary. Personally Ensures beat Fortisips marginally and vanilla or banana my preferences. So have some in ready for when you can no longer eat again. Get your dieticians to prescribe them.
What’s new with me? I never thought back in the early days and months of recovery that I would sit here and type these words my mouth feels almost normal. I would say there are moments in the day I would say that I have 95% saliva, nighttime I still use 1/2 an xyimelt. I regularly get 8 hours sleep wake for sips of water but not enough to disturb me. I can now eat a packet of crisps, this week I progressed to cheese and onion as well as plain! Meat is still an issue, some I can eat some I can’t , Rib eye is fine as long as it is rare. Now I can do home cooked mince again, another progress. Casseroles some days ok, pork unless it’s in sausages is too dry. Bread is ok toasted, or if a sandwich dipped into soup. Chicken is getting better, this summer I have managed to eat sweet chilli chicken thighs cooked on a b b q again progress. Chicken breast still too dry unless smothered in gravy. Most soft fruits I am fine with so that’s a big change from my last blog, most vegetables are fine, salads (particularly lettuce) are difficult it still sticks in my throat. I have tried a sip of wine and gin and tonic not ready for those. Not being a drinker before, not drinking is not a problem for me but I know plenty who can enjoy the odd tipple so don’t despair.
I started this piece with a trip to see my ENT consultant, so the above title is apt. I was due the 26th of May at Pontefract but due to covid-19 this was changed to a telephone appointment. It’s strange speaking to your ENT consultant as they can only go by what you say. This time it was Mr Gunasakharan my usual consultant, he asked about our trip to Spain. I asked how were all the staff and consultants coping, to which he thanked me for asking. As he said to me I am now in the 18-24 month period where reoccurrence is highly unlikely, but we hoped my next appointment is a face to face as it’s reassuring to hear the words from the expert it all looks clear. I did ask for a blood test for my thyroid checking this a a must for any head and neck cancer patient as at least 50% of us to on to developing thyroid issues due to radiotherapy. Its not a major problem, easily sorted by thyroxine. I went to Pontefract hospital which is a covid clean hospital, I was seen very promptly, in and out in less than 5 minutes, the hospital was very very quiet. Rung Macmillann nurse as per instructions for the results and all looking good, within normal parameters. So me being me I asked for the numbers for my records. Last year my T.S.H was a1.87 this year 1.68 acceptable levels 0.4 to 4.00 so ok at the the moment
I also want to add I was told even though I have had a telephone consultation if I had any problems to ring either the Macmillan team or his secretary we mustn’t get complacent,the consultants are trying to protect us as well as themselves ,but not at the expense of us worrying.We know our own bodies, and I wouldn’t hesitate if I needed to be seen in these difficult times.
I often get asked how’s my hair ? Proof that it does grown back
The question I get asked the most is what do I need to be ready for treatment. This list isn’t a definitive one but it helped me with a few additions from others:
Soft toothbrushes Curaprox Amazon.
Duraphat toothpaste prescription
Humidifier Amazon cool mist approx £25
Nebuliser my hospital gave me one
Boxes and boxes of tissues.
Lip balm (non-petroleum jelly)
These are all on prescription you may be given some, all or none
Gelclair for ulcers,caphosol mouthwash, difflam throat spray,co codomol 30mg/500.if you need it oramorph or a longer lasting fetynal patch, or longer lasting m s t morphine.Don’t be scared you are using them for pain not pleasure.neck cream I was given sobrederm many use Aloe Vera gel.Always ask your team avoid anything too scented keep it simple for baths and showers.Plus all the opiates do make normal loo functions difficult so make sure one day one of treatment either movicol or laxido is prescribed.Another point if you don’t qualify for free prescription s once you have a cancer diagnosis you qualify for free prescriptions for 5 years so download or ask for the exemption form in the meantime save all chemist receipts.You will end up with a cupboard full of the various lotions potions and tablets
Hard to believe on the 14th of January this year 2020 it will be one year since Dr Sen gave me the piece of paper with the words no sign of any FDG take up in the pet ct scan, which equated to no signs of any cancer in my body. Well a year has passed since I last saw Dr Sen, he now wants to see me on an informal basis once a year until I reach the magic 5 years. It was good to see him at Leeds cancer centre and he is very pleased with my progress and also impressed at how many views over 13,000 worldwide the blog has reached in the last year. We chatted about the rise in HPV driven cancers, as I am also noticing more people contacting me in the last 6 months. At any given time I have at least 20 people in varying stages of treatment and many more of us having successfully completed treatment and on the road to recovery.
One comment I did make was the fact that everyone who comments to me, all have the same gripe; why are they told in a matter of weeks you will start to feel normal, so here’s hoping the parameters will eventually be changed along the lines of some people may feel normal in a matter if weeks, many will take longer. Unfortunately it’s not a one size fits all recovery, there is no magic tablet we can take.
As for me I still have a 20 min lunch time nap most days, I have finished acupuncture treatments for now as I feel they did their job in kick starting things.
Going forward what’s next, well according to the NHS, when I reach 2 years post treatment, what I have with regard to saliva output, eating and general well being is normally as good as I will be. However recent studies in the USA are extending that period to 3 years so that will be interesting to see.
Top tips which I have put in earlier posts, but people keep asking for them.
Make sure you get prescribed Duraphat toothpaste which I need for rest if my life.
Find a soft toothbrush I use Curaprox 5400 individual bristles. amazon sell them.
A humidifier for bedroom I also found useful during and after treatment, mine was a Cool mist brand name again Amazon.
Your hospital should give or loan you a nebuliser, you can use plain boiled water if the saline dries you out, I used mine when mucus was at its worst up to 6 times a day.
Before treatment sets in and makes eating hard, try and bulk up, it’s almost always inevitable their will be weight loss, purely because it’s our mouth and throat area that takes a battering from chemotherapy and radiotherapy.
Ensure, Fortisips or whichever high calorie food supplement your dietician prescribes they aren’t nice but you do benefit from the extra calories. I started diluting them with water. Extra bonus you get extra hydration at the same time.
After treatment finishes keep a record of what you are eating and drinking it helps you and also the dietician. I was told I needed a minimum of 2000 calories and 2 or 3 litres of water in first year after treatment.
Dry mouth; sorry imagine your worst every hangover mouth! Well you may have that every day for a while but forewarned is forearmed. I still use half an Xylimelts tablet, pop it in your mouth before bed. It helps me to sleep so that I get at least 8 hours with odd sips of water during night. I get them online from the mouth ulcer company, just keep them away from pets as they are poisonous to dogs and cats.
My eating is almost back to normal now, I still can’t eat anything spicy, it may come back it may not. Don’t be surprised if your favourite foods have been replaced by things you didn’t like pre treatment it seems common among fellow sufferers.
What got me through treatment was positive mental attitude, cancer wasn’t going to define me and I would like to think that’s the case. John and I now look at it as a blip in our life. On a plus side we’ve made many friends and acquaintances through this blog and the cancer forums that I will continue to support as long as someone out there needs me. The blog will continue to be updated as and when I have something new to say or I have found out an interesting fact.
Christmas was a lot more hectic than last year, Christmas Eve buffet was for 13 of us and Christmas Day Lunch 10 of us all at our house.
See below for the tribe photo
How did I cope, well it was organised with military precision, lots of lists and some delegating. Food wise it wasn’t my best day, meat can still be difficult to eat Pork and Turkey just didn’t want to go down. Plus I started with a cold a few days before the first proper cold since treatment began in July 2018. When talking to Dr Sen he did say colds will linger longer due to immune system being compromised by the chemotherapy, so it’s a point to bear in mind. This year we both had the flu jab, I couldn’t have it last year due to pet ct scan not being until January, I wasn’t allowed to have any live vaccines.
Well what’s next for us: Spain is beckoning so will soon be back on our bikes.
Radioactive Raz 